Hi everyone

bookgeek71
bookgeek71 Member Posts: 5
edited March 2014 in Caregivers #1
Good evening everyone,
I've lurked on these message boards on and off and decided that I need to join in and participate. I moved in with my mother Feb. 2009 to take care of her. She has Stage IV breast cancer and had been fighting it on her own for 3 years before I got here. She hit the point where she needed someone with her. Since then I've learned way too much about cancer, drugs and various types of weird side effects.

For the first six months, she was pretty mobile and doing ok. Since last year at this time, she has been going downhill. I now help her bathe and dress. Help her into bed, make all the meals, fight with her to eat. Listen to all of her fears and anxieties. Try to keep her out of the hospital and more. Thankfully, she has a great oncologist. Not thankfully, she didn't live near any family. So, i'm pretty much doing this on my own. I don't have any friends here because I can't leave her for longer than a couple of hours at a time. My sister is not very helpful. She was just here a couple of weeks ago to "give me a break". She got off the plane, through an intense hissy fit and I didn't get to go away and recharge like I needed.

I am grateful for the internet to keep in touch with my friends who are elsewhere. I think that support from others in my situation would be helpful.
Thanks for listening to me vent,
Erica

Comments

  • Luv2lunch
    Luv2lunch Member Posts: 270
    #2
    Hi Erica,
    I'm glad you are
    Hi Erica,
    I'm glad you are here. I am also taking care of my Mom. She moved in with my husband and me in April. She has rectal cancer. She has gone through chemo and radiation, the major surgery to have a permanent colostomy, and now going through more chemo. I am also taking care of everything for her. I have two brothers. One lives 15 minutes away and the other 2 hours away. Both are useless. The one that lives 15 minutes away has come over 3 times since April. They have 4 kids, Mom's grandkids. You would think he could bring one over to visit, but no. My husband is disabled from a work injury and doesn't work. So basically I am trying to run this house, take care of the two of them and two dogs, and working 20 hours a week. It is really tough. I have been told on this site and from others that you need to take time for yourself. Even if it is for 10 minutes a day.
    Can you maybe take a walk around the neighborhood for a half hour or so, just to clear your head? Put some nice music on and walk?
    I'm really sorry about your situation. Please know you and your Mom will be in my thoughts and prayers tonight and the following nights.
    Please write if you need to vent or want to talk.
    Love,
    Linda
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    Luv2lunch said:

    Hi Erica,
    I'm glad you are
    Hi Erica,
    I'm glad you are here. I am also taking care of my Mom. She moved in with my husband and me in April. She has rectal cancer. She has gone through chemo and radiation, the major surgery to have a permanent colostomy, and now going through more chemo. I am also taking care of everything for her. I have two brothers. One lives 15 minutes away and the other 2 hours away. Both are useless. The one that lives 15 minutes away has come over 3 times since April. They have 4 kids, Mom's grandkids. You would think he could bring one over to visit, but no. My husband is disabled from a work injury and doesn't work. So basically I am trying to run this house, take care of the two of them and two dogs, and working 20 hours a week. It is really tough. I have been told on this site and from others that you need to take time for yourself. Even if it is for 10 minutes a day.
    Can you maybe take a walk around the neighborhood for a half hour or so, just to clear your head? Put some nice music on and walk?
    I'm really sorry about your situation. Please know you and your Mom will be in my thoughts and prayers tonight and the following nights.
    Please write if you need to vent or want to talk.
    Love,
    Linda

    Hi Erica
    There is so much support here, you will find loving, caring people.
    Hang in there and try to take one day at a time. ((Hugs))
  • bookgeek71
    bookgeek71 Member Posts: 5
    #4
    Luv2lunch said:

    Hi Erica,
    I'm glad you are
    Hi Erica,
    I'm glad you are here. I am also taking care of my Mom. She moved in with my husband and me in April. She has rectal cancer. She has gone through chemo and radiation, the major surgery to have a permanent colostomy, and now going through more chemo. I am also taking care of everything for her. I have two brothers. One lives 15 minutes away and the other 2 hours away. Both are useless. The one that lives 15 minutes away has come over 3 times since April. They have 4 kids, Mom's grandkids. You would think he could bring one over to visit, but no. My husband is disabled from a work injury and doesn't work. So basically I am trying to run this house, take care of the two of them and two dogs, and working 20 hours a week. It is really tough. I have been told on this site and from others that you need to take time for yourself. Even if it is for 10 minutes a day.
    Can you maybe take a walk around the neighborhood for a half hour or so, just to clear your head? Put some nice music on and walk?
    I'm really sorry about your situation. Please know you and your Mom will be in my thoughts and prayers tonight and the following nights.
    Please write if you need to vent or want to talk.
    Love,
    Linda

    Thanks Linda
    You really have your hands full. I'll keep you in my prayers also.

    I also have two dogs. Every morning we walk for about an hour before our day starts. It keeps all of our minds right. Plus tired dogs are happy dogs. i started doing this back in February. It helps a lot. I'm hoping that it gets cooler in the afternoon so that maybe I could add a half hour walk when Mom's napping.

    They say that God doesn't give you more than you can handle. I keep talking to him about that. :-)
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    the isolation
    Erica,
    I know about the isolation of which you speak! I go three states away to take care of my mother for 7-10 days each time she has a crisis (once, twice a month) and during that time I feel really isolated and bored on not-so-busy days. Family drop in from time to time, which is great, and I've taken myself out on a couple of "special dates" to see museum exhibits or other interesting events.

    It sounds like your mom might qualify for some home nursing or sitter services, worth at least asking your onc's nurse, to give you more time off. You could also ask the local ACS about linking you up with other caregivers nearby. I have this fantasy of participating in a reading group at Mom's local library as my caregiving time becomes more or less continuous in the coming months.

    Doesn't it make your day when someone from home calls to see how you're doing? Supportive friends of caregivers need to know how much we appreciate them!
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    bookgeek71 said:

    Thanks Linda
    You really have your hands full. I'll keep you in my prayers also.

    I also have two dogs. Every morning we walk for about an hour before our day starts. It keeps all of our minds right. Plus tired dogs are happy dogs. i started doing this back in February. It helps a lot. I'm hoping that it gets cooler in the afternoon so that maybe I could add a half hour walk when Mom's napping.

    They say that God doesn't give you more than you can handle. I keep talking to him about that. :-)

    welcome
    Erica,

    Welcome to this group of very caring people. You have come to the right place.

    I'm sorry to hear your mother is so ill. Watching a loved one decline is very difficult, to say the least.

    And, in spite of what people say about the expression "God doesn't give you..." it is actually from "Gone With the Wind". I believe Miss Melanie said that. We all know what an eternal optimist she was :)

    What God says is that He will be with us through everything. And He is.

    Hugs.
  • 3Mana
    3Mana Member Posts: 811
    #7
    Support
    Hi Erica,
    So sorry you're going through this with your mom. It is so very hard to watch them suffer, but you just have to take one day at a time & be thankful you still have her. My mom died in 89 but only was sick for 2 months. It was horrible to watch her deteriorate so fast. We always had hope and so did she so never wanted to face what was really going to happen. My husband died this past March and was also sick for only 2 months & died suddenly from a traumatic & rare side effect from one of his chemos. We were married 46 years.
    So be strong and confide in us because so many of us have gone through this so we know what it's like. I'll say a prayer for your Mom!!! "Carole"
  • stepmj
    stepmj Member Posts: 32
    #8
    I can relate
    Hi Erica -
    I can relate on a smaller scale. I moved in with my Dad for what turned out to be his last five weeks – we lost him on October 1st (just a few weeks ago). He too fought the cancer battle (esophageal) for the first 12 months on his own (we lost Mom 5 years ago) – I only live an hour away so he wasn’t totally alone but he lived alone.
    The five weeks of intense days and nights and being away from my family was life-changing for me – I’m still trying to reconcile everything Dad and I both went through. Like you, my family was not as supportive as they could have been and I provided 98% of the care that Dad needed – like you I was lonely and not being able to talk things out with anyone made it more difficult.
    Have you considered talking with the doctor about hospice care? They were my saving grace – having the nurse come to the house regularly and on-call at all hours gave me tremendous support. They offer volunteers to stay at the house while you get a break – I did not take advantage of this but in hindsight I wish I had. Beyond that they have a lot of resources and good advice that kept me going.
    Like you say we all know way too much about cancer, drugs, doctors, and dying….it is easy to become almost obsessed with these things – which is not good – try to keep a healthy mix of distractions – hobbies, TV, books, etc, and take advantage of hospice volunteers if you go that route.
    You have my prayers and any support I can offer –
    MaryJo
  • bookgeek71
    bookgeek71 Member Posts: 5
    #9
    stepmj said:

    I can relate
    Hi Erica -
    I can relate on a smaller scale. I moved in with my Dad for what turned out to be his last five weeks – we lost him on October 1st (just a few weeks ago). He too fought the cancer battle (esophageal) for the first 12 months on his own (we lost Mom 5 years ago) – I only live an hour away so he wasn’t totally alone but he lived alone.
    The five weeks of intense days and nights and being away from my family was life-changing for me – I’m still trying to reconcile everything Dad and I both went through. Like you, my family was not as supportive as they could have been and I provided 98% of the care that Dad needed – like you I was lonely and not being able to talk things out with anyone made it more difficult.
    Have you considered talking with the doctor about hospice care? They were my saving grace – having the nurse come to the house regularly and on-call at all hours gave me tremendous support. They offer volunteers to stay at the house while you get a break – I did not take advantage of this but in hindsight I wish I had. Beyond that they have a lot of resources and good advice that kept me going.
    Like you say we all know way too much about cancer, drugs, doctors, and dying….it is easy to become almost obsessed with these things – which is not good – try to keep a healthy mix of distractions – hobbies, TV, books, etc, and take advantage of hospice volunteers if you go that route.
    You have my prayers and any support I can offer –
    MaryJo

    MaryJo,

    I've become friendly with several of the people that work at the cancer clinic. They're my biggest support. I keep thinking about hospice, but Mom doesn't want to entertain the idea. I need to ask around and see if it's a viable option.

    She was in the hospital at the end of August for five days. Prior to her release, they got us set up with Home health care. Well, the inhome pt was very helpful. The home health care itself not so much. The nurse showed up, took her temp and blood pressure, asked how she was doing and left. For some reason, I thought that it would be almost like hospice.

    I try to have hobbies/distractions. TV, books and the internet help a lot.

    Thanks for your support,
    Erica

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